Welcome to my first ever blog post!
How did I get here?
It’s hard to know exactly when I started feeling not quite right, as it was so long ago. I do know that about half way through my first year at uni I had my first significant illness, of many to come! I caught a bad virus, which the doctor said wasn’t a big deal, and I had uni work and a social life to catch up on; so after a couple of weeks when the worst of my symptoms were over, I went back to it. But although I looked fine, I didn’t feel quite right. I was tired, really tired – the only way I could describe it was that feeling when you’ve just woken up and you feel half asleep, except that was ALL the time, and I could never fully wake up. Blood tests showed that I’d actually had glandular fever before, though the virus was gone by this point, and everything else was normal. I was diagnosed with Post Viral Fatigue and advised to rest over the summer holidays, which I (mostly) did, and felt pretty much OK by the beginning of the next year.
But by the next summer, I was tired again. So I rested again, and was able to go on my year abroad with few problems.
The years after this saw my health go up and down. Sometimes I would be pretty much fine, travelling the world, enjoying life, exercising. But I would also go for months at a time being so tired, and needing to just rest my way out of it. During the first 3 months of my Master’s degree my energy plummeted and I spent most of the time resting, studying the bare minimum, with blood tests coming back normal and no ideas or concern from the doctor. The years spent studying masked the problem to some degree, as I didn’t have the hours of a full-time job, so didn’t have any huge demands on my body. And students sleep all the time anyway, right?!
There was always something wrong. Constant muscle ache, swollen lymph nodes, insomnia, frequent viruses, infections, digestive issues…Sometimes it was really minor things, like having a poor alcohol tolerance or feeling completely wiped out after exercising. I was embarrassed. I didn’t want to make a fuss, or to be labelled as a hypochondriac. Doctors would tell me “you’re just a bit run down”, “I’m tired too”, or my favourite: “you just need a big dose of self-esteem!” This, coupled with an underlying fear of ME, which I thought only affected people severely and as far as I knew was incurable, caused me to live in denial and normalise a state of being which, looking back, was far from healthy. I explained away my symptoms, thinking I was overly sensitive, didn’t exercise enough, didn’t think positively enough, just needed a holiday, just needed another hour in bed…it felt like I was constantly struggling to stay afloat, to keep myself in life.
I was hard on myself in ways I now realise were unhelpful. I would sometimes think: well, the doctors say there’s nothing wrong with me, I’m no different to anyone else, so why can’t I just get on with it and do what everyone else is doing? A young, healthy person would have no problem going out, working late sometimes, exercising and drinking, so if I just push through, surely my body will fall in line…At other times, I took on having low energy has part of my identity – maybe I just wanted a quiet life? Maybe exercise, early mornings, travelling and parties just weren’t really for me?
I tried many things over the years to feel better. Meditating, acupuncture, tonnes of supplements, cutting out gluten, yoga…at one point I literally could not function unless I had done half an hour of yoga in the morning to wake up. A lot of what I tried helped in some way, but nothing was the answer.
By the time I started my most recent job, my energy was surprisingly good at first, though looking back, I was probably running on adrenaline. Then in May last year I caught a virus – my lymph nodes were (even more) swollen, I had a sore throat for 2 months, and I was profoundly tired. I was using sugar just to stay awake through the day. I remember doing my groceries and having to eat something there so I could last the 10 minute walk home. Gradually I went from sleeping in at weekends, to sleeping all weekend, and when I got home from work. I couldn’t understand it, I didn’t even feel stressed!
As always, the blood tests came back normal.
The doctor told me I had Chronic Fatigue Syndrome. He said this was just me, there was nothing I could do about it and I would have this for life. He said he had a daughter my age and would be devastated if she had this illness. He offered me antidepressants, even though he agreed I wasn’t depressed.
Scared and not wanting to settle with a life-long, incurable condition without having explored every possible avenue, I asked to see another doctor. He diagnosed me with Post Viral Fatigue (again!) and advised me to have some time off work. When I could finally stop, I immediately got much worse, so tired that at one point I could only sit upright in bed for short amounts of time, and lying down just breathing felt exhausting; it felt as if I had been poisoned.
I was off work for a month, and realising this is an under researched illness that doctors know little about, I started looking into the mind-body connection, tried the Gupta programme and did the Lightening Process (I will explain these in another blog post!) I returned to work, but I still wasn’t right. Initially I felt a little better, and saw a general nutritionist, which boosted my resilience. But soon I found myself unable to concentrate in meetings and underperforming, dragging myself out of bed in the morning, with any sort of social life out of the window as I struggled desperately to stay in work and keep my life going. With little medical explanation, I was very confused and conflicted about what was happening to me; the information on the internet is so vast and nebulous. I struggled to explain it to friends or colleagues. In fact, no one really asked, because I looked fine. This is probably one of the hardest aspects of the illness – that it is invisible and can vary wildly month to month and even minute to minute. Unless you know me very well or literally follow me around for the whole day, and can see that my face is a bit paler or my eyes less bright, it can be impossible to tell how much energy I have.
In November, I could feel my energy really slipping again. Some stress at work coupled with the feeling that working full time was way over my limits in terms of energy expenditure, and I felt myself go. I went home after giving a presentation (and probably looking absolutely fine!), and felt everything shut down. I was exhausted just sitting on the bus. I could barely speak. Every noise and light cut through me, as if my skin was suddenly so thin that my body was battered by everything…
Since then, I’ve had to make my world smaller. I have found myself having to make choices – like do I spend the little energy I have for the day taking a shower, or making lunch? There have been times when I haven’t been able to leave the house for a week, and only then to buy food. I’ve had to put everything in my life on hold to give my body time and space to heal.
Fortunately I’m gradually improving, and am grateful to be seeing the brilliant Optimum Health Clinic, which combines functional medicine/nutrition with psychology, and has helped thousands of people to put together the jigsaw that makes up recovery. It’s taken longer than I ever could have imagined, and as I have learned, it’s not a straight road, and there are many ups and downs.
Despite all this pain – and there are days when I do feel like giving up, when I see my friends going on holidays, getting married or progressing with their careers whilst I’m stuck in my flat – I see this illness as a gift. I was half asleep physically, mentally and spiritually. I have learned so much, and would never want to go back to the way my life was before. There have been moments of indescribable lows, but also moments filled with joy, as I see the world from a whole new perspective. I believe that the body is capable of healing itself, and that recovery is possible.
So that is why I wanted to call this blog Waking Up, because I am waking up, in so many ways, and I would like to share what I am learning, as these are things that everyone can apply for a healthier, happier life.
3 thoughts on “My journey so far”
A colleague I am working for has one out of two sons suffering from the same. They didnt believe/understand him at first, but started taking him seriously around 10 years old when they saw he would not use his chair but instead study at his desk by sitting on the knees «so that he could not fall asleep without waking up»…
Your words have moved me to tears Rachel. This is wonderful and life affirming work which you are using not only to heal yourself but also spread light to those who come into contact with your radiance. Thank you so much for this. ❤️
Thank you so much!! Helps me a lot to know I have your support x